Hi, I've been having these sensations in my legs for about a year now and I'm wondering if you could advise if it sounds similar to your RLS.
I have a buzzing vibrating sensations in my legs constantly when I am sitting or resting. It feels like buzzing it's the only word I can really use to describe it.
It is less noticable when I'm moving around ( I don't know if it goes or the movement if the leg hides the vibration sensation).
I have fasculations in my legs, arms, stomach etc every 6 seconds approximately.
I get pins and needles in my feet very easily.
I also get very itchy sensations in my legs, this is most noticeable at night.
My neurologist thinks I have RLS however, it's all freaking day. It never ends, there are no attacks at night for example, I will notice all the sensory symtoms the minute I sit down and it never ends. Also I don't need to move. I will wiggle about because it gets annoying but I'm not like "my legs will move without me if I don't get up". I can also see alot of the fasculations.
I sleep about 12 hours a night, and fall asleep pretty quickly.
The doctor has given me mirapex to try. Should I give it a go? Would I expect it to work immediately if I do?
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I would like to rule RLS out or in ( if I have it) as I'm sick of being tossed through doctors telling me it's anxiety as it's not. If I take mirapex would I expect it to work, what does and how long before it is effective? I've done all the nerve tests and they Re find and mris
It sounds like you have some features of RLS but not all, in that case it's not RLS, you need ALL.
Pramipexole should be effective imnediately. My best suggestion is, it's up to you, if you've taken it more than two nights, but less than 3 weeks, STOP.
Hi John, I have exactly the same senstions as you, even the itchy skin. I feel as if a fly has landed and walking on me. I have pins and needles in my hands and feet and my feet are often very cold. My toes feel painful at times and move on their own.. I also have the sensations through the day and find it is easier moving around. My situation is a bit complicated as I have to wait until the end of March (will be three months) to see if a long term nebulized antibiotic (for bronchiectasis) has caused my symptoms. If I still have these sensations I maybe sent to a neurologist to find out the cause. As I have kidney disease possibly caused by being prediabetic or medication this is also a possibility.
Manerva is a very knowledgeable member of this forum and will probably cast some light on your situation. I would expect him to reply to your post soon.
Hi again, I appear to have some RLS symptoms but not all of them. As Manerva says we have to have all the symptoms to fit RLS. I wish I had answers but have to wait until time has lapsed before anyone will take things further.
I have to be perfectly honest with you I would listen carefully to what Manerva says. I believe he knows as much, if not more than my own doctor. When I come to the end if the said period if time I hope things will progress and they find out what my neuropathy problem actually is and what is causing it. However I feel Manerva has a great understanding of these problems and I have learnt a great deal from him through reading hid posts.. As a result I feel more able to ask relevant questions of my doctor and hopefully a neurologist, in the future. In fact I know I will refer back to him first before starting any treatment suggested to me.
It's a very distressing condition we have. I do hope you get the answers you are Looking for. I will let you know how I get on and hopefully you will keep in touch with us.
I think I might have benign fasculation syndrome. Other people in the Reddit bfs thread have trouble with vibration and buzzing sensations. I can also see my fasculations.
I guess there is a cross over between the symptoms of RLS and bfs however there is no neurological compulsion to move in bfs. There also appears to be no medication at all for bfs. It's supposed to be in response to a virus or extreme stress. There is also no day night variation which is the case for me because it happens 247
The complicating factor is that people with bfs notice it less when moving because the muscles are not at rest and therefore do no fasculations. I suppose that would explain why movement does stop the twitching and internal vibrating.
Further bfs is generally worse in the legs and feet ( again another reason why people think RLS). I have the twitches all over my body but it's definitely a hundred times worse in my legs and feet and the vibrations and buzzing is only really in my feet/legs.
I'm going to try the RLS medication anyway, see what happens then go back to the doctor.
Hello,I have the same problems since 3 years. Doctor said RLS but I am not sure of it because I have some stenosis too. My biggest problem are internal vibrations.
I do not understand why I have soda-pop feelings, wobbly legs...
At this moment I have stiffness in my body too...
Balance is off.
Muscle twitching a lot. I only have twitching AFTER movement.
It's sad that some people and doctors think it is anxiety...
Maybe it is or maybe not...? I don't know it anymore.
I wish you all the best and hope that we can help each other.
If you tried the medication for RLS however you could rule out whether it is RLS or not? That would give you a method of how to approach it. From the advice on this site you would only need to take one or two doses and you should see instant effects if it is RLS. Then you would know what you are dealing with
Hello again John
Following what I previously wrote.
Unfortunately, what neurologists seem to do if they can find no physical signs of a "nerve" condition, they say it's RLS. They do this without consideration, or possibly even knowing about the diagnostic criteria for RLS.
Here's a link to the internationally accepted diagnostic criteria For RLS.
Please NOTE, that in order for anybody to confirm the diagnosis of RLS your symptoms must match ALL the criteria. If there is any single one that doesn’t match, then RLS can NOT be confirmed.
The principal defining symptom of RLS is “the urge to move”. The best way I’ve found of describing this is that it is just that, and nothing else. There are many things that cause us to move including, to avoid pain, to re-position ourselves to ease discomfort, general restlessness, nervousness or anxiety.
What youdescribe does NOT sound like the urge to move and hence, I’d say, you don’t have RLS.
In addition, although RLS can occur at different times of the day it typically happens at night, or is WORSE at night. For it to be consistently intense equally throughout the day is highly suspicious and if you don’t have it at night then this is another reason for me thinking you don’t have RLS.
Furthermore, although the criteria don’t directly identify this, the sensations and urge to move can be so severe when lying down to sleep that they prevent you getting to sleep. Also as regards sleep, RLS causes hyperarousal and hence even if getting to sleep is successful, it doesn’t last long.
You sleep!!!!!
Sleep deprivation is often the reason that RLS sufferers seek medical help, it’s not just the symptoms, it their consequences i.e. chronic insomnia.
My conclusion then is that you do NOT have RLS.
Also note the fifth criteria. Since you have other symptoms that are NOT RLS symptoms i.e. fasciculation and get pins and needles in the feet easily.
Pramipexole, a dopamine agonist medication, typically stops all RLS symptoms at the very first dose. If it doesn’t, this may be because the dose is too small. I’d say, probably, if it hasn’t worked for you at all, (i.e. made no impact on the symptoms whatsoever) within a few days then you don’t have RLS.
In which case I suggest you STOP it immediately.
This is only a suggestion as someone who has some experience of RLS and pramipexole over many years. This is not medical advice. It is always unwise to ignore medical advice stating that you should NOT take a medicine, but you are well within your rights to ignore advice that you SHOULD take something.
Even if you were to have RLS, pramipexole is no longer recommended as the first treatment to be prescribed for RLS because of it’s consequences. It’s recommended that other medicines be tried first.
I don’t think it necessary to frighten you with the consequences of pramipexole here.
However, it does produce dependency, i.e. your body gets used to it and you can’t do without it. I’m not sure how quickly this happens, but it may be as little as a few weeks.
In which case, if you do stop it, it’s your choice, there is a possibility that you may experience some withdrawal symptoms. Hopefully only a very small possibility, but if you do stop it, the sooner the better.
The withdrawal effects are RLS symptoms.
It appears to me that your symptoms point to something else, such as Benign Fasciculation Syndrome. There are various possibilities which I can’t advise you about.
Hopefully you have had tests for diabetes, thyroid function, renal function and anaemia.
Thank you! I would like to take the medicine to use it to rule out rls. I've not taken it yet. I've been given 0.088 mg should that be enough or do I take a higher dose? Do I expect it to work in a matter of hours?
It's normally taken at night 2 - 3 hours before bed OR just before the time symptoms normally start in the evening. Since you don't have symptoms then, it's not really relevant.
If your symptoms only start after you wake up in the morning, try taking a tab when you wake up.
If you really want to try it, if it's going to work, it should work within 3 - 4 hours.
Take one tab only, if after 3 days it hasn't worked, you could take two tabs. When they don't work, stop.
I'm fairly confident you don't have RLS and that they won't work.
Sorry I just checked the dosage. The doctor has given me extended release 0.375 as that is only 0.088mg every 8 hours should I take two if one tablet does not work?
The extended release version is completely different, it takes longer to work and lasts longer.
I wouldn't take two. To be honest I wouldn't advise you take any at all.
My advice is to copy and print out the diagnostic criteria, go back to your doctor, show the criteria to him/her and ask if they're really convinced you have RLS.
If they're still convinced then I'd advise you to ask for an α2δ ligand (gabapentin or pregabalin) NOT any dopamine agonist.
These are recommended alternatives to dopamine agonists for RLS Not only that but α2δ ligands are now recommended as the FIRST treratment to be tried before dopamine agonists.
Here's a link to some information about the ligands and RLS
Also would early (as in early in the disease) present as symtoms which you can lay in bed to and basically listen to as I'm my legs fasculations and vibrations can go on for hours and I can just listen to it. At no point am I compelled to get out of bed. I do toss occasionally because the fasculations can itch. Or would even if the RLS has just presented I'd still need to move?
Another possibility is that you ask your doctor for a one off test dose of L Dopa. This would work fairly quickly within a couple of hours, i.e. if it's going to work at all.
When it doesn't it might convince your doctor, and you, that you don't have RLS. If it does work, then try gabapentin.
This is pretty drastic but might be better than taking the other toxic drugs for a few days or even weeks.
Is RLS more responsive to ldopa than prami? I do have symptoms at night, sorry, what I was trying to say is they are no different at night compared to that at day.
I just watched an YouTube video of a Peter's story from RLS foundation and he has it all day every day.
I would like to just take the medication to move onwards rather than sitting in purgatory not knowing what to do.
Hi Yes, I can appreciate your anxiety and eagerness to sort this out.
It's really up to a doctor to help you decide the best way forward as they have to prescribe the medication.
RLS is essentially diagnosed according to the criteria, it is the extent to which your symptoms match the criteria which is the key. You and your doctor have to decide if they do or not.
If they dont fit, don't try to make them fit.
Fasciculations aren't RLS.
I can only advise you not to take the pramipexole but go back to the doctor. It's not a good idea to impulsively rush into starting any of these medicines.
However, as this is causing you some distress, you may as well just go ahead and take what you've been prescribed and see what happens. You should expect some effect within 8 to 12 hours.
My concern for you is that the longer term consequences of taking a dopamine agonist are loss of efficacy, augmentation and Impulse Control Disorder, (ICD). Augmentation is where the drug makes the RLS symptoms signficantly more intense, affecting more of the body more of the time and causes chronic insomnia and sleep deprivation.
Augmentation is very common.
The best way to avoid this is to take an α2δ ligand
Hi just wondering if you are still around on the site, as I would like to have a chat with you, your symptoms sound just like mine. I go between thinking its BFS / RLS. Neuro told me I was doing it myself and its anxiety. !!!
The last two nights I wake up in the middle of the night because it feels like my legs are vibrating. It's do strong. It's out of control. It wakes me up. I don't get up and move around. I roll over and go back to sleep but the sensations are ridiculous and I'm starting to really struggle. I don't know if the vibrations are RLS or internal twitches like the external twitches I have ( fasculations)
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